This is something I've got to understand better.

I regularly get what feels like a 'mini' attack, not quite (okay, not nearly) as painful, very sharp, but it fades quickly. very briefly. Usually this is a warning that I should drink some water, take some caffeine, and sit down while I can.

Is this a 'shadow?' it doesn't always precede a real headache. but I get them a lot. In between full-on attacks, I get these weird things.

Also, as far as pain perception is concerned. I have the strongest feeling that there is actually an object boring into my head, breaking through the skull, pushing the eye out of the way, boring down the back of my neck. I also get this impression (I would never actually do this,but...) that if I were to just drill a hole at the top of my left temple (left sided headaches), the pain would all seep out.

Burning eye pain isn't like a 'hot poker', but it feels like a very hot, very sharp crushing force (not entirely like pressure).

In all of this,  I handle pain well. I always have. Don't get me wrong, I shudder, hit my head, press into my eye, tremble. But I can't shake this bizarre sensation that it's not specifically the pain itself but that my brain can't comprehend or otherwise handle these sensations and remain aware.

I have to know if anyone else has similar experiences, I'm still trying to really understand all of this.

Yes. I am experiencing the same symptons/sensations today, matter of fact. Had a very bad ch yesterday. Today, I have felt all of the pre ch symptoms: Nausea, shadows (Both piercing and duller pain) and I've been exhausted all day.
  I tried an energy drink for the first time today. RIP from Dollar General. $1 for 16 oz. Pretty cheap in comparison to RB and others. Citrus orange. Tastes pretty good. IT WORKED!!!
I had just started to feel nauseous and had a few twinges of pain over/behind my right eye as usual. I drank 8 oz cold and immediately felt better. Within 5 minutes any pain was gone. Was it just the ch doing what it wanted??? Or did the drink stop it??? I'm 50/50 on it. I will have them stocked always just in case. Have a 5 hr energy in my glove box too.

I hope my relating this helps you in some way.

Dan

We're not qualified to diagnose headache symptoms as you describe them... 

That said, a shadow, as coined by Bob Kipple in his "Kip Scale," is just a cluster headache, albeit at the lower pain levels.  I don't recall if Bob attached any duration or length of pain at this level, but suffice it to say, a shadow is still not normal... and in my book...  it should be treated.

The best course of action is to see a neruologist or headache specialist with an accurate description of your headaches, their duration and any other symptoms associated with them. 

I'd also ask for the lab test for 25(OH)D...  The normal reference rage for this lab test is 30 to 100 ng/mL...  Odds are you're deficient... i.e., less than 30 ng/mL.
Take care,

V/R, Batch

I've seen a neurologist and been diagnosed. I have episodic cluster headaches (apparently left-side is uncommon?)

My question was basically meant to be "in your experience...." etc.  I was told to do some research by my doctor, and I'm trying to really understand this. I was 17 years old, home alone (read: both parents had moved out) when I had my first attack. It's been 7 years not knowing what this is.

I am also trained in anthropological data collection, so for me, it's quite natural to try and see what other people experience. it's how I learn.  Sorry to confuse you all.


So, is hypersomnia or high levels of fatigue typical with bad CH? Also, I'm curious, is it unusual to have fewer "10s" than "6s" ?

Lucifer wrote on Mar 13^th, 2013 at 11:37pm:

So, is hypersomnia or high levels of fatigue typical with bad CH? Also, I'm curious, is it unusual to have fewer "10s" than "6s" ?

I only experience fatigue when I've had multiple hits in a short period of time, or when they come during the REM cycles and I can't sleep. As for the 10's and 6's, it is my considered opinion that the KIP scale is being used similarly to the regular pain scale: subjective to the level of pain tolerance an individual has, and not objective to the symptoms. This has bothered me for some time since the KIP scale is designed to describe the behaviors induced by the CHs and not the level of felt pain. A 10 by definition is a screaming black bag of pain that will very often result in a ride to the hospital for some IV treatment. I know it doesn't say that but this gets abused almost as much as does "rebound" vs. "recurring" headaches.

Finally, after the rant (whew, I feel better, how about you?) yes, my chronic hits are well managed and as a result I no longer have to endure them beyond the first sign of a hit for more than 3-5 minutes. That keeps them 5 and below. God bless. lance

I'm with Lance in that the PERCEPTION of pain is so subjective. As to drilling a hole in your head.....in my late teens I contemplated taking a sharp knife and cutting the tendon that I could feel at the right, base of mny skull. The sensation was this tendon ran from the base of my skull to a point behind my eye. If I could just severe ths tendon, I feltI could stop the pain! :D Fortunately, I never followed through. It's amazing what you'll fantasize about to get you through a hit!

Before I had an effective treatment regimen, My cycles would begin with dull headaches, 1-2 times a day. It would take several weeks to build to the peak of my cycle where I'd get hit with head bangers 2 times a day, mid morning and late afternoon. Peak would last about a month, then the cycle would fade out the same way. So just on the numbers scale, it would work out to where I'd have far more of the lighter and mid hits then the head banging screamers.

Joe

Hey Lucifer,

After my first cycle (Jan-Feb) I've had almost a full month of these mini-attacks.

Prior to the attacks, I was intolerably tired (and extremely irritated and angry about everything) for a good couple weeks.

Good to hear from you. I think you'll find it very intriguing how many possible treatments there are for this... disease. And good to hear from an anthropologist. I'm a data guy. Maybe we can get along.

Hi,

I've wondered the same for a while, I suffer from near on constant headaches at a pain level I perceive to be a 4/5 so irritating but tolerable. I double over when I get a sharp pang and poke in my eye alot as even tho i work through it its damn painful, but too me this is a shadow. I have had 3 attacks where I could do nothing but scream, they were contractions in my head. To me it becomes a full CH once I start grunting or making noise with the pain. Anything else is a shadow and as hard as it is I try to get through with as little meds as i can manage. Obviously at my worst this can't happen, and all 3 massive ones its been hospitalisation. I suffer severe fatigue whilst in a cycle but I put this down to being in a moderate amount of pain for so long, it's gonna take its toll. Before I was diagnosed I was told endless times by my very frustrated mum that I must just have very low pain thresholds, obviously very wrong and a bit insensitive! I have since been told by my neurologist that I've probably got a distorted view of pain due to the fact that its constant whilst in a cluster period and because the worst I've experienced is not imaginable to non sufferers and that what I consider a minor shadow is probably a moderate tension headache level pain to 'normal people' as I judge it compared to the major clusters. And I've got to say i agree, i see it in my family, who are migraine sufferers. I hope this makes sense and that it explains my views and thoughts on shadows and pain tolerance.

Next time you are at your Dr I would suggest you discuss "Ice pick headaches" with him.  These are short intense HA's that hit and are gone quickly.  They are similar in many ways to CH, and I know a couple of people who deal with both.  As Pete said, we can't diagnose or play Dr here.  All we can do is share from our experiences.  I'm really glad your Dr told you to do your own research!  Very few Dr's recognize the need for that, and say "take this and see me in ..." I think it is Guisseppi who has something in his tagline about waiting for the Dr to cure you is going to leave you in pain for a long time.  (Very loosely paraphrased)

I don't believe left sided hits are anything unusual.  Right side may be a little more predominant, but I know quite a few lefties.

A K6 will be experienced more frequently than a K10.  If all attacks were K10's there would be very few to populate this board.  Especially as you learn to deal with CH you will learn to abort right away so that the pain level will not usually get that high.  There will be some that will break through and get to the upper Kip levels, but after all the years I've been dealing with CH, very few of mine go above a K7 any more.  That is because I've learned how to deal with them, though.  If I did nothing about them I would be where I was a number of years ago banging me head on the floor every time.  CH can be dealt with.  Doing your research, learning to find what works FOR YOU, and then having a Dr who will work with you, or finding a way to work around your Dr, will enable you to function and deal with the beast.  (In the interest of transparency, there are those who are totally intractable to any remedies, but they are by far the exception, and not the rule.)

In the meantime, read as much as you can here, and as you read ask questions of what you don't understand.  There are many hundreds of pages of info available in the archives.  Use the search box at the top left of the screen to search out various meds, treatments, whatevers until you develop a regimen that works FOR YOU.  I emphasize that because not all things work, or don't work, for all clusterheads.

Jerry

I don't think I get icepick headaches. I told my doctors about the 'shadows' and they are certain it's all cluster.

The 'shadows' aren't brief, but there are bouts of incredible stabbing and burning pain in my eye and near the coronal suture spreading into  the squamosal suture. It feels like an electric drill, and it burns so bad it makes my eye water. Sometimes it goes away after 15-30 minutes. Sometimes I am shocked at how severe the pain gets and it escalates fast.  Putting pressure on the area by squeezing my skull helps. Low frequency sounds also help. I find that death metal played through good headphones at high volumes can bring some relief, sometimes.


I can usually sit down during a shadow, but I can't sit still. I also have a very specific threshold where I leap up and have to move, hit my head.


These headaches seem to be quite variable with people.  I always get the at the same time daily, even shadows. I get about 6 of these more mild mild (k4-k5) shadowy attacks daily.

Question about oxygen. We burn a lot of incense in the house, especially in the spring when we can open the windows. (there's nothing like the smell of spring air and incense!)

this does not mix well with having oxygen in the house, right? My spouse is also a smoker. So no O2 for me.

Oxygen is fine with a smoker, as long as certain precautions are followed. I'd use the oxygen in an open space, not near anyone smoking. After you finish the abort, realize you and your clothing are saturated with oxygen, any exposure to an open flame or even the coal from incense could turn you into a roman candle. Give yourself 10 minutes in the fresh air to dissipate the saturated oxygen and you'll be fine.

But yeah, no 02 use in an area where incense is burning, or in the presence of someone actively smoking. Both are recipes for horrific burn accidents.

Joe

In my experience, any HA not treated with O2, or another abortive such as an imitrex shot etc, will always grow to very high levels, say level 9-10.  Head banging, rocking, walking, seeing stars etc.  But over time you will learn the difference in feeling between the shadows, and the zingers(ice pick stabs) that happen all the time with your CH, and the start of a full blown attack.
    To me, a full blown CH starts with a tingle, and feeling like a rubber band is starting to vibrate in my brain,  and it grows and grows.   A shadow or a zinger is just there all day, and doesnt grow.
    Sometimes those zingers can almost knock me to my knees.  They happen so suddenly and can be very painful, they just take me by surprise, and they are like being suddenly kicked in the head.   >:(

hay Lucifer

just wanted to point you to a previous post of mine about shadows , to save some typing.

search for A Description of Shadows

Hope this offers some insight for you .

God bless

Nigel

In Nigel's post he gives a very good description of a shadow. It's more a warning of what's to come without the full intensity of the pain. There are also a lot of us lefties out there, although for some it changes from cycle to cycle. I've been a member of the sinister gang for about 30 years. There is a post on the site with the results of a headache survey that will give you a lot of information, too. Good luck taming the beast.

Lucifer wrote on Mar 13^th, 2013 at 11:37pm:

I've seen a neurologist and been diagnosed. I have episodic cluster headaches (apparently left-side is uncommon?) My question was basically meant to be "in your experience...." etc.  I was told to do some research by my doctor, and I'm trying to really understand this. I was 17 years old, home alone (read: both parents had moved out) when I had my first attack. It's been 7 years not knowing what this is. I am also trained in anthropological data collection, so for me, it's quite natural to try and see what other people experience. it's how I learn.  Sorry to confuse you all. So, is hypersomnia or high levels of fatigue typical with bad CH? Also, I'm curious, is it unusual to have fewer "10s" than "6s" ?

I too suffer from the left side.  I have been curious as to if it has any factors of dominant side of brain, meaning, since Im left handed  is that why its on my left side?

The left handed / right handed link to which side your CHs are on has come up quite a few times before. It normally rapidly comes to the conclusion that there is no obvious connection between the two.